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The Challenges of Defining and Diagnosing Brain Death

A new Johns Hopkins support team helps clinicians and families understand a difficult diagnosis.

By Karen Nitkin

Date: 11/07/2017

A woman lies in a bed at The Johns Hopkins Hospital. Aided by a ventilator, her lungs inflate, deflate, and fill again. Her heart beats and her skin is warm. But her eyes stay closed and she does not react to stimuli such as pain and light.

Is she alive or dead?

If you’re unsure, or if the question makes you uncomfortable, you’re not alone. The hypothetical case described here reflects a real problem: the inherent difficulties of diagnosing and accepting brain death.

The topic was the focus of a September Ethics for Lunch discussion in the Chevy Chase Bank Auditorium of The Johns Hopkins Hospital, hosted by the Berman Institute of Bioethics.

The panel was moderated by anesthesiologist and critical care specialist Robert Stevens, who says the line between life and death, once clearly perceptible in the form of a beating heart, is now sometimes harder to see because of advances in lifesaving technologies.

The modern intensive care unit can keep a person with severe brain injuries alive, he says, but may also mask evidence that the person has died. The shift from a deep coma to brain death—permanent cessation of all brain function—may not be immediately obvious to an untrained observer. Yet recognizing this transition from life to death is critical for families, the medical team and potential organ recipients.

When a patient dies, doctors stop treatment and instead focus on organ viability. The body is kept on life-support machinery if the patient was a registered organ donor or while the family makes decisions about organ donation.

To help clinicians make a brain death diagnosis, The Johns Hopkins Hospital in June 2016 created a Determination of Death by Neurological Criteria Support Team.

Here’s how it works: A patient arrives in the emergency room after an overdose, car accident or other trauma that caused extensive brain injury. Doctors do everything they can to stabilize the patient, but his brain may have suffered irreversible damage.

When attending physicians suspect a patient is brain-dead, they may opt to call a consultant—a Johns Hopkins neurologist, neurosurgeon or critical care specialist with experience and training in two different, but related, areas: the techniques used to determine death, and communicating the nuances of the difficult situation with primary care teams and family members.

The consultant performs a full neurological examination to determine if there are any signs of brain or brainstem function. This includes assessing the drive to take a breath, determining whether pupils react to light, and swabbing the back of the throat to elicit a gag reflex. The neurological examination must be repeated at least once after a minimum interval of six hours, to ensure that brain function is not temporarily suppressed by factors such as high doses of narcotics or intense cold.

The support team helps those consultants by providing guidance and answering questions. “Our only advantage is experience, because we handle more of these cases,” says neurologist and neurocritical care specialist Adrian Puttgen, who forms the group with anesthesiologist and neurocritical care specialist Adam Schiavi, and neurologists Rafael Llinas and Brett Morrison. “This team is written into our hospital policy. We monitor in the background and come in as needed when there’s a question.”

Because of that support, brain death determinations take less time than in the past. “We owe it to the families to resolve the question of whether a patient is alive or dead as quickly as possible,” says Puttgen. “Otherwise, it’s a state of limbo.”

A brain death diagnosis is nearly always confusing and overwhelming to family members. In a few states, though not Maryland, doctors must accommodate the preferences of families who refuse to accept the diagnosis for religious reasons.

That happened in 2013, when the parents of Jahi McMath moved the13-year-old from a California hospital to one in New Jersey after a brain death diagnosis following tonsillectomy complications. Her body remains attached to life-support machinery.

“Most people have this notion that you’re recognizably alive and then you’re recognizably dead,” says Schiavi. “What’s happened is that our technological ability to sustain life has moved faster than our moral capacity to deal with the implications.”

The support team is helping. “We are taking active steps to change the culture, not only for families but for physicians as well,” he says.

Brain death is often confused with other conditions that seem similar, such as coma and vegetative state.

Brain death: Irreversible cessation of all functions of the entire brain, including the brain stem. A person who is brain dead is dead, with no chance of revival.

Coma: A state of profound unresponsiveness as a result of severe illness or brain injury. Patients in a coma do not open their eyes or speak, and they do not exhibit purposeful behaviors. Some patients need ventilators while others do not. Doctors sometimes place patients in medically induced comas to give their brains time to heal. In general, comas last just a few days or weeks. Patients either die or regain consciousness, or in some cases progress to a vegetative state.

Vegetative state: The person has depressed consciousness, brain stem function and can breathe without support. Patients in a vegetative state may respond to pain or loud sounds, go through sleep-wake cycles, and exhibit involuntary motions. A person in a vegetative state for more than a year is considered to be in a permanent vegetative state with extremely low chance of recovery.

Probably the most famous case was Terri Schiavo, who lived in a vegetative state from 1990 to 2005 after collapsing and losing oxygen to the brain at age 26. A legal battle ensued, with her husband saying she should be allowed to die and her parents pushing for her to continue receiving food and water. The husband eventually prevailed and her feeding tube was removed.